Registry of respiratory monogenic diseases in Chinese children
Beijing Children's Hospital
This study is trying to gather information from children with rare lung diseases to help understand their symptoms and improve future treatments.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 200 (estimated) |
| Ages | 1 Month to 18 Years |
| Sex | All |
| Sponsor | Beijing Children's Hospital Academic / other |
| Locations | 1 site (Beijing, Beijing Municipality) |
| Trial ID | NCT03528525 on ClinicalTrials.gov |
What this trial studies
This multicenter, prospective cohort study focuses on children diagnosed with respiratory monogenic diseases. It aims to collect and follow clinical information, including symptoms, lung function, chest imaging, and quality of life indicators over a period of five years. Patients will undergo standard diagnostic processes and their clinical data will be monitored to better understand these diseases. The study seeks to establish a comprehensive registry that can aid in future research and treatment approaches.
Who should consider this trial
Good fit: Ideal candidates are children aged 0-18 years with symptoms consistent with respiratory monogenic diseases.
Not a fit: Patients who cannot provide complete medical records or are unwilling to participate in the study will not benefit.
Why it matters
Potential benefit: If successful, this study could enhance understanding and management of respiratory monogenic diseases in children, leading to improved patient outcomes.
How similar studies have performed: While similar observational studies have been conducted, this specific focus on respiratory monogenic diseases in children is relatively novel.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: 1. Age: 0-18 years, male and female. 2. Any organ system symptoms consistent with the diagnostic points of respiratory monogenic diseases. 3. Agree to retain specimens related to disease research and agree to store the specimens in the sample bank. 4. willing and able to cooperate with long-term follow-up. 5. The guardian of the child has a full understanding of the purpose of the study, a basic understanding of the clinical research program, and voluntarily allows the child to participate in the study and sign an informed consent form. Exclusion Criteria: 1. It is unable to provide complete medical records or the current condition can not accept the diagnosis process 2. She or he cannot agree to participate in the study.
Where this trial is running
Beijing, Beijing Municipality
- Beijing Children's hospital — Beijing, Beijing Municipality, China (Recruiting)
Study contacts
- Study coordinator: Kunling Shen, MD,PhD
- Email: kunlingshen1717@163.com
- Phone: 861059616308
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.